A 50-Year Search for an Alopecia Treatment That Finally Worked

Brandi Jones was 18 months old in 1972 when her mother noticed a small bald spot on her head. The local doctor offered reassurance but no real explanation, telling her mother only that the baby did not have a brain tumor and would probably be fine. There was no diagnosis, no treatment and, in the years before the internet, almost no information available. Jones said the pattern that followed, hair falling out in patches and sometimes growing back, continued through her childhood and teenage years, with hairstyling products as her only tool for covering it up.

Decades of Trial and Error

Treatment options remained limited well into adulthood. Jones described moving through a long list of approaches over the years: topical ointments in college, triamcinolone injections in her 30s, oral prednisone, methotrexate and hydroxychloroquine. Some provided short-term improvement before hair loss resumed elsewhere on her scalp. Two treatments stood out as especially difficult. A squaric acid application meant for one spot ran down her neck and ears, causing burns and blisters that kept her out of work for days. Hundreds of PRP injections followed, at a cost of nearly $1,000, with no results.

Jones said she also fielded frequent unsolicited advice suggesting her hair loss was caused by diet, stress or nutritional deficiencies, comments that added guilt to an already difficult experience. Learning in her early 40s that alopecia was classified as an autoimmune disease brought some relief, she said, even though it did not change her treatment options.

What Was Missing From Her Care

Looking back, Jones said the bigger gap in her care was not medical. Appointments were typically short, and no provider asked directly how alopecia was affecting her emotionally or socially until she enrolled in a clinical trial in January 2021. She was handed a psychosocial questionnaire asking whether the condition had affected her relationships or professional life, and said the experience caught her off guard in a good way. It was the first time a provider had acknowledged the toll of the condition beyond hair loss itself.

Jones said she now encourages clinicians to ask patients directly how alopecia is affecting their lives rather than assuming it is a purely cosmetic issue, even when a patient insists it does not bother them.

Starting a JAK Inhibitor

Before entering the trial, Jones spent about two months researching JAK inhibitors on her own, including how the treatment class’s black box warning had originated from a different autoimmune condition rather than from alopecia-specific data. That research, combined with her experience on other systemic treatments, left her comfortable moving forward.

Jones said she noticed a difference within the first week, and by the second month she had visible regrowth. She has remained on the same twice-daily 8-milligram dose for five and a half years, with only one small regrowth setback following a stretch of COVID-19 infection, a COVID-19 vaccine and the flu in close succession. She has described her side effects as minimal, noting that any weight gain or cholesterol changes coincided with pandemic-era lifestyle shifts rather than clear medication effects.

Rebuilding a Life Around Confidence

Jones said the change in her quality of life has been significant. Before treatment, she avoided removing her hairpiece even in front of close family, limited outdoor activities on windy days and withdrew socially out of fear that her condition would be exposed. She now describes feeling free to live without constantly monitoring how she looks.

Jones is an administrator of a Facebook support group for people using JAK inhibitors for alopecia, with about 23,000 members, and encourages patients not to give up searching for a provider willing to discuss both treatment options and quality of life. She also urges clinicians not to wait until a patient has lost 50% or more of their hair before considering a JAK inhibitor, noting that by that point many patients have already endured years of ineffective treatment and significant emotional strain.